What is the emotional labor that comes with living with a lifelong health condition like diabetes? I’ve been thinking about this a lot this week. Firstly, because I was asked to talk about this to a group of researchers to help them understand the barriers that participants might experience when engaging participants in research. It was a great discussion with many questions and hopefully a new understanding of the burden that diabetes places on us. And when I felt the weight of that burden more than usual, I thought about it.
The emotional labor of living with diabetes is a complex and often invisible force that deeply shapes our life experiences. It’s the mental and emotional effort we put into the never-ending demands of this condition. It involves an internal dialogue that asks if we are doing enough, trying hard enough, feeling good enough, and being enough. In addition to the physical labor of treating diabetes, it is important in itself. Being constantly alert, constantly making decisions, and thinking about how those decisions will affect our immediate and long-term health and well-being creates a constant emotional burden. The mental resilience required to deal with diabetes every day is an additional burden in itself, and when you add all these parts together, it can sometimes become an unbearable weight that you feel like you can’t carry it anymore. Sometimes I feel it.
But that’s not the end. Living with diabetes is itself an act of advocacy, even if that advocacy is only for ourselves, and whether or not we use that word. Others work on advocacy issues and causes, leading efforts, participating in them, and speaking about them. Whether you participate in advocacy as a day job, in a consulting-type role, as a volunteer, or as a hybrid version (me), all of them involve the mental labor of diabetes. increase.
Of course, advocacy can be energizing. Striving for better health care, promoting greater understanding, and campaigning for supportive policies are efforts close to our hearts, and seeing them produce amazing results energizes us. The level will increase. Working with people living with diabetes to make a difference in our community is motivating. But it can also be tiring. Each advocacy effort draws from our already limited reserves. The constant need to explain, justify, and fight for our rights and needs can lead to burnout, leaving us feeling drained and discouraged in a never-ending battle.
I spent a lot of time there this week. I was exhausted, discouraged, and defeated, and the weight of my advocacy work cast a long, dark shadow that brought me to tears many times.
We know this is a story for people with diabetes, and the mental health of diabetes is finally on the table, but it is important to understand that we are living with diabetes and being advocates for mental health care. I have to say that it is not.what on earth is that? feel like. The best allies I know are those who recognize this gap in understanding and do everything in their power to keep it from growing, who don’t overshadow our voices and efforts, and who are willing to step back and learn. .
One of the ways people with diabetes have tried to cope with this work and the burnout that comes with it is by building communities and networks of peers. Solace from the burden of diabetes is found in those who share their experiences in the sanctuary, where our suffering does not have to be explained but is deeply understood. These are safe spaces where we exchange stories, share tips, and lift each other’s spirits. These communities become a source of support and encouragement, where our emotional labor is shared and our advocacy efforts are collectively strengthened. It is essential to protect those spaces in order to draw strength from them rather than being overwhelmed by them.
In recent years, I’ve found myself becoming increasingly selective about where I find that support. Twitter was probably the first to be left behind because it was no longer a safe place. Every time I think back to those innocent tweets about my own diabetes choices, I remember being attacked by fellow low-carb people. I replaced the openness of social platforms with closed group chats for people with diabetes. I knew I would get support without the risk of trolling. Those chats give me light to guide me through the shadows.
This week, with the burden of diabetes weighing on me, it was hard to find that light. My network is always there, but sometimes it’s not enough when everything is overwhelmed.hosting This week’s #docday°And hearing from advocates around the world who are doing incredible work wasn’t enough to give me clarity. I thought about how I could get through this, but I couldn’t find an answer. Other than this: One of the things we do well as a community is lift each other up. Because it’s all about our community and other people with diabetes. So even if you feel burdened, you can focus on it. I also hope that by spreading the word about and supporting my fellow diabetes sufferers and their efforts, I too will rise up.
Two things you need to know about the community…
Don’t spare a rose, save a life We are still accepting donations here.thanks to the wonderful defenders Tinotenda To promote this year’s campaign.
Please sign and share this petition And read the consensus statement initiated by the #dedoc° voice group calling for uninterrupted insulin access in humanitarian crises.congratulations Lucia Thank you for coordinating this work.
